What advice would I give to parents and carers? SHORTS version

“I wish I had known all about the different presentations of autism, about masking and demand avoidance. Then I might have realised a lot earlier in my parenting journey that they were autistic. Also, the strong hereditary links so that traits you the parent associate as normal you realise are possibly autistic traits - so just because you experience or did experience similar it doesn't mean everyone experiences that. The links between autism and poor mental health, and that you may see anxiety before you see any other traits. That you should trust your own instincts more and not believe that professionals necessarily know best.” Joanne Feaster, LinkedIn comment, January 2025

Recently, Jo Billington posed a question in a LinkedIn post: “To parents and carers of autistic children: what’s one piece of advice or information you wish you had known earlier in your parenting experience?”. The quote above was my response, and the comment received a lot of positive reactions. In this newsletter, I will expand on this initial, off-the-cuff response.

Different presentations of autism, masking and demand avoidance

I had heard of autism before early 2021 when traits were first identified in my children, who were 9 and 6 years old at the time. However, I hadn't studied it in detail, and none of the depictions I had come across matched my children.

Despite some challenging times at points during their early childhood and school lives, I did not spot the autistic and ADHD traits for several years. At times, they displayed externally visible anxiety or challenging/naughty behaviour, but I never understood the triggers or misinterpreted the behaviour.

With hindsight, I could identify behaviours and experiences I had observed and struggled to deal with that were likely ‘autistic experiences’ for both children. These included:

• Separation and social anxiety.

• Excessive worrying.

• Difficulties understanding communication and behaviour of their peers.

• Anger management issues.

• Sensory issues.

• Constipation issues.

• Difficulties with changes in routine.

• Talking excessively (son) or limited talking and shyness (daughter).

• Overreaction to being disciplined at school.

• A strong sense of social justice and fairness.

• A strong reaction against arbitrary rules.

• Difficulties engaging in formal learning at home beyond reading (homework and during COVID).

• Perfectionist tendencies – avoiding rather than risking failing.

Another reason I may not have spotted traits earlier is that my children are different in terms of their presentation. It’s important to understand that everyone is unique and has a unique profile of strengths and challenges.

Understanding the hereditary links – what is ‘normal’ anyway?

One reason that many parents and carers don’t spot neurodivergent traits in their children early on in their lives is that they may well be neurodivergent themselves. Therefore, many of the characteristics they observe will be their ‘normal’.

This also extends beyond parents to the extended family. Similarly, with friends, it’s a natural human phenomenon to gravitate towards those who think and act like us. What this means is that our frames of reference tend to be skewed. We may not consider that there is anything notably different or unique in how we or our children process and behave.

This is why school age, particularly key transition stages within school age, is when many traits become more apparent and noticeably different from those of other children.

A lack of awareness and understanding of neurodivergence means that parents and carers often first blame themselves for their children’s inability to comply with social expectations. Schools contribute to this blame game, especially with children who may mask their traits in school.

Links between autism and poor mental health

I was a worrier as a child, suffered from separation anxiety, and experienced similar issues of lack of confidence as my children experienced. Anxiety can also manifest as frustration and anger – for some children, it is easier to be defiant and to actively avoid and physically or verbally resist demands than to acknowledge that they are worried about it. Often, the response will be instinctive and subconscious; the child may not be aware of what is happening, so it’s even harder for parents to identify the root cause.

Anxiety is often what we see first. However, unlike many other children, who were understandably initially worried about a new experience, typical advice of gradual and repeated exposure never quite solved the anxiety for my children. It would come and go in severity, so the school would see the problem as ‘solved’, but there would often be an underlying baseline level of anxiety that never went away. I now know this is because the environment was unsafe for them. It was too noisy, demanding and changeable; they could not be themselves for fear of punishment or desire to ‘fit in’.

Being anxious seems to be seen in some parts as an accepted consequence of being autistic. CAMHS often refuses to help autistic children because they believe the anxiety is caused by being autistic as if it is an inherent trait and one they cannot offer treatment for. However, anxiety is only so prevalent for the autistic community because of the inhospitable environments many of us are forced to inhabit.

Trust your instincts

I wish I had trusted my instincts when my children were younger. I found it hard to comprehend that I might understand my children and what they need better than anyone else because I sometimes felt so at sea, confused about what the right thing was to do.

Particularly with my eldest, when she started to experience severe sensory issues over clothing, I was going to take her to the GP to discuss it and see if we could access any help. However, after speaking to family members who are more knowledgeable about how the system works, they suggested that asking for a referral to CAMHS would be unlikely to be productive. I did start speaking to the school about her anxiety and clothing issues, but they never flagged this as potentially being indicative of anything else.

I saw the anxiety and lack of self-confidence I had experienced throughout childhood coming back through my children’s experiences. Their struggles to get into school, which were severe at times, seemed different to most of their peers, but little substantive support was forthcoming. Parents' evenings followed a consistent pattern – academically doing well, as expected for their age – anxiety and lack of self-confidence were generally the only concerns.

Once autistic traits were identified in both children, I knew I needed to push for them to have support, for their needs to be better understood and for any neurodevelopmental conditions to be correctly identified. However, my capacity to advocate for them and to try and push the school into action fluctuated considerably due to what I now understand to be autistic burnout and the ups and downs of my bipolar symptoms.

I have lent into my instincts more and more as time has gone on. I have researched autism, ADHD and neurodivergence more widely. I have understood myself and my children more and more. I still don’t have all the answers by any means; each time we hit a stumbling block, I can become paralysed by indecision as to what the best thing to do next is. It’s a pressure that weighs heavily on my shoulders at times.

I want to rely on those who have professional expertise. I value the opinions of those we have been able to see. But none of them have the overview that I have as their mum.

Find other parents like you – the power of peer support!

If you’re at the start of your parenting journey or have reached a stage where you feel stuck and don’t know where to turn, I strongly advise you to find some local peer support from parents. Many charities and small community-led groups offer support groups for different needs and ages.

Speaking to others going through similar experiences is often an excellent means of getting signposting on what help you can access or should be able to get from official sources like schools, local authorities, GPs/healthcare providers, social care, etc. It’s also invaluable for making your experience less isolating and helping you feel connected to others.

About the author

I am Joanne (Jo) Feaster, a late-identified autistic and bipolar woman. I started self-identifying as autistic in May 2023 and was diagnosed with bipolar type 2 in July 2023. I am married and live in Leeds with my husband John and my two exceptional children, both of whom were diagnosed in late 2023 and early 2024 as autistic and ADHD.

I write to aid my mental health and to share my lived experiences as an autistic and bipolar woman and parent carer of my neurodivergent children. I subscribe to the social model of disability and the neurodiversity paradigm. I see our strengths, positive qualities, and spiky profiles just as much as I recognise the barriers we face from society.